Highbury brain disease patient ‘refused support’ by NHS

Relatives of a man suffering from a killer brain disease say he is being refused medical support.

Andy da Silva, 57, suffers from sporadic Creutzfeldt-Jakob disease (CJD) and requires round-the-clock help at his flat in Highbury Grove, Highbury.

His family say Islington Primary Care Trust (PCT) has refused to pay for care because it feels he should be in a nursing home.

Mr da Silva, a former camera seller who has a 13-year-old daughter, was diagnosed in May 2008 with the rare condition which results in rapid loss of movement, sight, memory and speech.

The normal life expectancy for CJD sufferers is four months but Mr da Silva began using an experimental treatment, known as pentosan polysulphate shortly after diagnosis, which has kept him alive.

He stayed in the National Hospital for Neurology next to Great Ormond Street between February 2009 and May 2011 because his family claim that the PCT refused to let him return home.

The family, which is considering legal action, has now been forced to borrow money to pay a nursing agency to help them provide the constant care he needs at home, costing several hundreds of pounds a week.

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Mr da Silva is unable to speak and bed-bound – but he is responsive and his family say he is visibly happier at home.

His brother Carlos, 52, said: “This has been such an upsetting time which has turned the life of my family upside down. He needs help 24 hours a day.

“My mother, aged 81, was spending 12 hours a day at his bedside so for various reasons it was not good for him to be hospitalised.

“Everyone involved in his care, except the PCT, thinks that his home is the most appropriate and safest environment. The PCT has dug its heels in and is not prepared to support him at all.”

Labour MP for Islington North, Jeremy Corbyn, said: “I strongly believe that those suffering from any condition are entitled to full NHS care.

“I have written to the PCT to urge them to support Mr da Silva’s homecare.”

A NHS North Central spokesman said: “We are aware of this very complex case which has been ongoing for two years.

“The PCT continues to liaise with the family to determine a level of care focused upon the best interests of the patient.”

But he said it would be “inappropriate” to discuss the possible outcomes.